I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: JScott1753 on June 02, 2010, 10:53:27 PM
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Just curious if anyone waiting for a transplant is signed up for what the clinics here call extended criteria. With E.C., you may get an older kidney, but the nice thing about it is the waiting time can be up to half the normal time.
At the first clinic's eval., I signed up for E.C. Since I've been on their list for two years on September 25, I need to start getting ready for "the call" which could(I know, **could**) come starting between 9/25 and 3/25/11.
Of course, re: the local clinic I discussed in my other message, it's going to take a "little" longer. ::) Strangely, at that clinic, you can only ask about E.C. after you get on their waiting list. Looks like I have another phone call to make in a little while!
Jon
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At my pre-transplant eval back in Feb, the surgeon brought up the topic of EC. He advised me to sign up for it because you never know from where could come the perfect kidney. EC just increases your chances, but he and the coordinator both were very adamant in telling me that should such a kidney become available but I was unsure about it, I could always say "no thanks" and that it would not affect my place on the list.
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You should read previous posts in the IHD threads about Extended (Expanded) Criteria Kidneys (Donors):
http://ihatedialysis.com/forum/index.php?topic=2608.msg36678#msg36678
http://ihatedialysis.com/forum/index.php?topic=18097.msg313632#msg313632
http://ihatedialysis.com/forum/index.php?topic=3708.msg54083#msg54083
These are kidneys meant to be offered to older dialysis patients (about 65+) or those on dialysis who have a poor prognosis if they were to continue on dialysis. Yes, the wait is less, but after five years, about half of the transplanted extended criteria kidneys fail.
Remember, it's all about informed consent.
8)
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At the three centers I have been involved with, extended criteria was meant for those that Zach just mentioned. I finally signed last year, but my age and PRA were the deciding factors. If I were young, I would hesitate to take an EC kidney. I would want the healthiest kidney I could get. I would not want one that was subjected to high blood pressure and age. But, just my opinion. Anyway you can get one, I hope it comes soon for you.
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I'm only 55 years old, but E.C. might be worth my consideration.
Because I've got FSGS. I know that a transplanted kidney may fail within two years, just like my existing kidneys have failed. So why bother getting a young kidney that's in tip-top shape.
It's like: If you only need a rental car for a few days, why spend extra money to rent a fine car from Hertz? You might as well rent a jalopy from Rent-A-Wreck.
So E.C.--a jalopy kidney from Rent-A-Wreck Nephrology--might not be a bad choice for someone like me with FSGS. The kidney's going to fail within two years anyway, no matter what shape it's in now.
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I refused and EC kidney. I had fsgs and my first kidney lasted 12 years. The FSGS did not come back.
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I have FSGS and I want the very best kidney possible. There is no guarantee that that FSGS will or will not effect the new kidney. Three different transplant surgeons have told me that there is no why to know if FSGS will effect the transplant, but in their observations, it usually doesn't. I didn't sign the EC papers until after my 60th birthday, many potential donors tested, PRA 100%, and I still have the right to decline (if I would get the call) after learning the facts of the deceased donor. Good thing is; we can learn all we can to make an informed decision regarding a transplant. Good luck to all of us :2thumbsup;
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I just visited NY Presbyterian to get on their transplant list - my second, behind Brigham in Boston. The NY surgeon encouraged me to go EC because it would open up a lot of possibilities. He also asked me to consider EC in Boston, saying that it would increase my chances of getting a kidney by some 40%. As he said, a kidney from a healthy 60-year old might be better than one from a 35-year old with unknown health problems. They are very aggressive at NY Presbyterian. They told me they accept kidneys from ex-convicts for example, who have well-documented health records. A kidney from such a person might be better than one from a person who had questionable, but unknown lifestyle choices. Their median wait time is among the shortest in the East according to internet statistics.
At any rate, when I got back to Boston I asked about being put on the EC list. They told me at first it was for people over 55 (I'm 53). But, in the end they did put me on that list. We'll see where this goes.
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The NY surgeon encouraged me to go EC because it would open up a lot of possibilities.
Did he also tell you that almost 50% of EC transplants fail in five years?
8)
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I actually asked my clinic to put me on this list, thinking that I could get a kidney faster, and they told me no. They said that I am too young. (Im 27). I just think everything is against my odds of getting a kidney soon. (High antibodies (well 18-30%), O+ blood type, and cant go out of state).
Lisa
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Oh, Lisa, you really are too young at 27 for EC. I am surprised they said no, but I think it is for the best. 18-30 PRA is not that high! My surgeon once was praising my candidacy for the clinical trial he was running, saying that I have "no antibodies to speak of" when my PRA was 17, the highest it has ever been to my knowledge. Standards differ, but I think under 30 is considered low sensitization. I hope you get your kidney soon!
I was told at my centre that no one under 40 should consider EC, those from 40-45 should decide based on their individual circumstance, and anyone over 45 should probably sign. The surgeon claimed (and who knows for sure - I wonder if I could find their individual stats for this) that they examine each kidney and that he would only accept a kidney for a patient that he was willing to give to his own mother. (I swear, that is how he put it.) He said that many kidneys from older patients are completely healthy and could easily last another 25-30 years and that he can examine the cell structure and morphology of each kidney before he makes a call to offer.
The USC surgeon wanted me to ask my mother for a kidney. He asked how old she was and got really excited when he found out she was in her early sixties. I thought that was odd, since in the next breath he told me that if I tried my luck on the list, he would refuse to offer me "the 60-year-old stroke victim's kidney". I put it down to the white-hot pressure that hospital used in encouraging people to find a live donor.
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Here are some stats:
http://www.ustransplant.org/annual_Reports/current/Chapter_III_AR_CD.htm?cp=4#8
In five years, 55% of the ECD are still working.
In ten years, 28% of the ECD are still working.
Yes, the wait time on the list is shorter, but so is the survival of the ECD graft.
8)
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This is from UCLA's Transplant Program info regarding EC kidneys:
The UCLA Kidney Transplant Program participates in the ECD system by offering extended criteria donor kidneys to all patients who are older than 50 years old and those with special medical needs who have consented to be on a list to accept these kidneys.
The main benefit of agreeing to accept an ECD kidney is that it may shorten the time waiting on the list for a kidney transplant. Receiving a transplant enables you to stop dialysis. Life expectancy once transplanted is greater than life expectancy on dialysis. You may be transplanted sooner if you choose to accept extended criteria donor kidneys, because the number of patients eligible to accept these kidneys is smaller.
more here: transplants.ucla.edu/.../ExtendedDonorCriteria-Dec07.pdf
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Lisa,
I am not surprised they said no, and I actually support that. given your higher than 0 PRA and your age, in my view going EC would really be a bad choice long term for you. Heck, I'm nearly 40, and even if that option was offered here I would not go for it. If I was 60+ then yes, I would, but we're young and there's so much we could be doing. I'd rather not play those chances and wait longer for a younger kidney with a greater chance of lasting longer. Yes, it's all a gamble I understand and we all want to get off dialysis and have a more normal life, but for me I'd rather wait longer and set myself for the best chance I can have of a longer time away from D than go the quicker fix.. because once I get that transplant I know my PRA will never be 0 again and the chances for a 2nd are reduced by that much, so I want #1 to last as long as possible.
I know sometimes it seems like we'd be a good match for an EC kidney by the time we get a regular transplant - the waiting is very very difficult (I'm over 4 years at this point and it does seem to get harder the longer it takes) - but I am a keen supporter of "no pain, no gain" - in this instance, the "pain" is the extra waiting for the gain of a kidney that hopefully will last longer....
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because once I get that transplant I know my PRA will never be 0 again and the chances for a 2nd are reduced by that much, so I want #1 to last as long as possible.
Richard, I had a transplant and a blood transfusion (several, I think) and multiple pregnancies (more of those than actual, live children) and my PRA was zero in 2007, after all of that. Your PRA will not necessarily go up from a transplant, but it is of course a possibility. I certainly cannot argue with the thinking that you want your transplant to last as long as possible. Hell yes, you do! I think you were wise to pass on the EC.
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The PRA may not go up for everyone after a transplant. But, the chance for going up is very high. Looking at the waiting lists, the longer waiting time, the higher proportion of patients with repeated transplants. This seems to be true with waiting lists in any centers. If one is less than 60 years old, it needs to be careful when deciding for the EC.
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One of the centers where I was listed was really pushing the EC kidneys. I am only 43. The transplant coordinator, who I love, took me aside and told me not to do it that I was really for people in their 60's and 70's. I have type O negative so I waited awhile.